If you had the chance what would want to tell medical staff about dealing with brain injured patients?

Was there something that was really good about your treatment or something you wish had been different? How active were you in your own treatment? Did the hospital treat YOU or your injury? I have been invited to speak at an event exploring the patient voice and the importance of listening to patients. I will speak about my own case but there is a wealth of knowledge and experience in this group and i'm keen to share other people's too. Grateful for your thoughts. James

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  • I was not active at all, being in a coma for 3 weeks meant most of my treatment happened during that time. A further 5 weeks spent in hospital, starting to become aware of what had happened to me and 5 weeks in rehab, when I was finally aware and could participate.

    Because I was only on a general ward the nurses were really unaware of the specialist care I neede, but they did ok and thank goodness for my family, they were able to ensure I got the right treatment.

    I was berated on one occasion for not using my buzzer, when I could actually not see it because of damage to my eyesight, but that wasn't picked up then.

    One doctor asked me why I was chanting, I used to repeatedly chant numbers, how should I know? I felt he should! It helped calm me and evidently it is common for brain injured individuals to do repetitive actions, especially rocking.

    I think more awareness would help in the training of hospital staff, or ensure patients are placed in specialist wards.

    Janet

  • well i have a few suggestions.

    firstly like many others they just run through the motions, but dont really understand how the injury affects a particular person. also how can a person describe their own memory loss to someone that doesn't have it, and have sound credible....

  • How about offering treatment appropriate to the disability I am currently hitting my head against a brick wall (pardon the pun) trying to get Gp's (other than my regular GP) to accept my current problems may be related to my TBI and not Mental Health Issues

  • My wife had a TBI three years ago on top of Hydrocephalus and Scoliosis. The medical teams in the recovery and rehab wards were great with the possible exception of some of the healthcare assistants who were moved around the hospital wards to gain experience (and cover for shortages of staff). There is no substitute for experience!

    However, on return to hospital to address other issues in a general ward, it soon became apparent how ill-equipped they were to deal with someone who had cognitive difficulties following a TBI. I guess the thing they need to do is read the patients notes and make sure all medical staff who will come into contact with the patient have been briefed at team meetings and handovers. In an ideal world they would have enough staff in the recovery/rehab wards so as to be able to provide support to general wards when they get TBI/stroke survivors admitted. Not really viable in the current NHS...

    Hope that helps.

  • I was mostly asleep and when awake due to Post-traumatic amnesia I wasn't making much sence. But I wasn't agitated in any way and quite calm I was mostly being observed in the Trauma Ward, they that i remember where kind and attentive, I had a line in out in since I couldn't keep meds down, i loved being clean after the bed bath, I still had blood matted hair at that point.

    Being a Trauma ward I clearly would be the easy to care for, while I was fairly confused I could follow simple instructions hence one nurse was more than capable of giving me a bed bath while others this being a trauma ward would require at least two nurses.

    I only have little snatches of memory at this point in time, but the care was good. Once they where happy that the subdural Hematomas where stable and I was reasonably with it, I was sent home where my wife took time off to watch over me, as I was still not in any way able to do much, of should do much.

    Some of the blokes I know had clearly watched too many carry on films and got bit interested about the bed bath, did have to point out if you need a bed bath it's really not "Ooh Matron!" In any way.

  • I WAS MISDIAGNOSED FOR 2 YEARS. I WAS TOLD I HAD PSYCHOLOGICAL PROBLEMS & TREATEDUNECCESSARILY FOR THOSE. THIS WAS DESPITE BEING IN SUCH AN ALTERED STATE OF CONSCIOUSNESS FOR THE FIRST 2 WEEKS AFTER THE ABI RUPTURED THAT I REMEMBER NOTHING.I WAS LEFT AT HOME WITH NO MEDICAL ASSISTANCE AT ALL. I HAVE NO IDEA HOW I FED, WASHED, DRESSED ETC. I COULD HAVE BURNT THE HOUSE DOWN &NOT HAVE KNOWN ANYTHING ABOUT IT. I WASN'T TRULY WITH IT FOR 4 MONTHS. 2 YEARS LATER I COLLAPSED AT WORK ,WAS TAKEN TO HOSPITAL (I REMEMBER NOTHING ABOUT THAT) RELEASED STRAIGHT HOME & FINALLY REFFERED TO A NEURO WHO DIAGNOSED IT STRAIGHT AWAY WITH THE COMMENT "WHEN DID YOU HAVE THE HAEMORRHAGE" MY CHIN HIT THE FLOOR. . 16 YEARS ON I AM STILL ANGRY THAT I WASN'T PUT IN HOSPSITAL OR AT LEAST ASSESSED WHEN I HAD THE BLEED, MAYBE EARLY DIASNOSIS COULD HAVE HELPED.AT LEAST I'D HAVE BEEN TREATED FOR THE RIGHT THING.

  • Firstly try and think of your experience yourself - think of your worst ever hangover, ask participants to stand up and spin round with their eyes shut and ask them to recite the alphabet backwards - that's what its like for us each day.

    I would start with examination, move away from the fixation with the GCS and MMSE guides the majority of head injured can pass these without any problem.

    Be sympathetic in the A&E consulting room - turn down the lights and provide some ice or something cool to apply old fashioned but it works.

    Improve the Head Injury guides, the majority of them only deal with the first two days and what to look out for - vomiting, blood from the ear etc. but not with the other symptoms you can get and what to do with them. Include a list of local support groups Headway, UKABIF etc. Advice on driving short and long term.

    Sort out the knowledge within GP's. Despite Headways efforts many GP's have little knowledge of Brain injury but if you turn up with something fashionable like Type 2 Diabetes they will pour support all over you.

    I didn't have a formal diagnosis for over a year. 11 months after my initial injury I tumbled down the stairs hit my head many, many times on my way down, split my scalp open and it still took another 2 months for them to give me an exam. The specialist then looked me in the eye and said it could take 4-5 years and there won't be much improvement for six months.

    Since man has been having head injuries since we first walked on the earth or knowledge and attitudes are still lacking

  • Maybe reiterate that if a head injury is scored as minor on the gcs it does not follow that the effects will be minor and transient. There seem to be more people on here for a while who's lif get changed from a minor injury.

    I had a moderate injury although the effects were on the more severe scale When the neuropschology people tested me. I was 'unusual', I felt this was derogatory a th time, but it went on to say no evidence of intentional something or other, which meant that I wasn't trying or I was making it out to be worse than it was. But I found it upsetting none the less.

    I am not a case study I am a person, people are all different, just because a book says this will happen by this stage, this is the expected outcome etc. there is always scope for a percentage to buck the trends. I was unusual in some respects but that did not mean that I would only make a certain level of gains.

    I hate when they say to you how have things been since I last saw you? How in gods name would I know? That question always floors me an I should be prepared for it but I always forget! The other one I struggle with is what would you like to do? The only time I had an answer to that was driving. Working, what would you like to do? No idea. I am an air traffic controller by trade and I can't do that. What would you like to do? I HAVE NO IDEA! Yes but if you had the choice to do anything you like, what would you like to do? FFS

    There needs to be more joined up thinking or maybe check ups with screening questions given at 3/6/9/12 months post injury no matter what the level of injry a bit like they do for new mums to catch depression. Sign posting to carers services/charities and support groups for the injured.

  • Oh yes the "What would you like to do?" question annoys me as well. After 30+ years in IT used to be at the top of my profession and I keep on getting told - why don't you take a junior role. I explain its like a consultant doctor deciding to become a nurse.

    Then the "What would you like to do?" question comes out - I have no idea after 30+ years of doing the same thing. After employing people myself over the years, I know that if I sat in front of me - I wouldn't employ myself, so why should anyone else?

  • Listen to the patient, just because they have a brain injury it doesn't mean you can dismiss what they say as nonsense. I remember not being able to stand even a thin sheet covering my toes but some of the nurses insisted on covering them as it looked better!

  • LISTEN TO THE SUFFERER IS THE THING I MOST WANT TO DRUM INTO EVERYONE. I DON'T EXPECT PEOPLE TO NECESSARILY UNDERSTAND, JUST LISTEN & ACCEPT WHAT WE'RE SAYING.

  • IN MY EXPERIENCE I WOULD TELL THEM TO KEEP UP THE GOOD WORK.

  • I spent 2 months in Salford Royal two years ago after an SAH. I have no memory of ICU but I was told that the care and conditions were second to none. (I went back to thank the staff 6 months later and the unit was amazingly high tech & spotless).

    As I emerged from the 'fog' I found myself on a rehab ward where I was seen daily by the consultant & physiotherapists, and once weekly by the psychotherapist and psychiatrist.

    Three months after discharge I had one recall appointment when I saw the surgeon who showed me the scan & explained the coiling procedure. I had an MRI that day ( and two subsequent ones over the next two years) but that day was my final consultation at the hospital.

    Like others here, I have residual problems which impair my quality of life (mobility, memory, coordination, balance, headaches) but nowhere to turn for help. I'm afraid that my GP surgery is full of GPs, all clueless on the subject.

    It's the main topic on Headway..........gritting our teeth & making the best of our individual situations. Mine's a story of excellent emergency procedures and ICU care, tailing off gradually to where I find myself alone and without anywhere to turn for medical help. Thank god for Headway !

  • Be patient with the patient. Do not mock or make light of our experiences. This is scary stuff - I was terrified. I said nothing because I couldn't form words. I was hungry and needed to pee but couldn't tell anyone and I couldn't ask for the bathroom or form anything to eat or drink because I didn't know what it was. I didn't know my husband's name and I was too scared to admit it. I got stuck on the questions they asked me and the more I tried to find the answer the worse I felt.

    Now years later I wish docs would read the file before they see me. I have no idea if or when I ever/last saw them, I can't report progress beyond the fact that if I turned up at the right place at the right time that is progress...

  • I was not the patient, my friend was and she was active and very confused. The day I turned up and she could no longer balance, had glazed eyes and slow verbal responses I knew they had finally had enough of her behaviour and employed the medical cosh. Please, please limit the use of powerful anti-psychotics to manage behaviour wherever possible.

  • i was so lucky to get sent paramedics who took one look at me and knew exactly wat was wrong,they told hospital to be ready as it looked like ruptured annie,n also suggested the hospital phoned through to the

    neuro surgeon in a differnt hospital,without there quickness i dont know what wouldve of happend,

  • What treatment but that was 50 yes ago all I can remember is waking up from coma treatment was be rest going home more rest that was IT my sons recent head injury treatment did not seem much better

  • LISTEN TO US PLEASE BECAUSE WE LIVE WITH OUR SYMPTOMS

    EMPOWER US WITH TOOLS TO HELP US HAVE LIFE

    WE HAVE LOST A LOT THROUGH THIS ACCIDENT AND GRIEF IS ALLOWED ..

    WE ARE STILL PEOPLE WITH DREAMS NOT THE ILLNESS ...

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